Angel Elizabeth's Story

A newborn infant with the same diagnosis as Melissa has come to live with us in January 1995. We are aware daily of Gods hand on this child. She has had two surgeries since January and has some difficult medical problems over and above the hydranencephaly. She was a 27 week baby so she had a difficult start without the primary diagnosis that threatens her. She had so many things against her that I feel God has a plan for her or she would not have lived long at birth. Her teenage parents were unable to care for her and she would become a ward of the state (although the state refused to help this couple unless they neglected or abused their baby). There was every reason for some to feel she was not compatible with a good quality of life. Well, in January I traveled to Colorado to pick her up from her young parents . They cried and thanked me for being willing to take her . They commented that they knew she would be loved. They held each other and cried-I cried-and Elizabeth and I rode away ..Immediately there seemed to be a bonding. .She is our baby for how ever long God allows.

When she was hospitalized in February the staff was concerned that maybe we didn't understand her condition -and that when we did we would probably not want to treat her. Right!! This infant was not getting enough nourishment and I was asking for help before she became too weak. I was able to contact the doctors that had taken care of many other babies for me. When they arrived she was stabilized with IV's. and scheduled for a gastrostomy -for feeding her directly into her stomach. Even then one of the original doctors explained that she felt I was putting Elizabeth through too much when she would never respond anyway. Would I consider just "letting her go"? She quickly told me "she didn't mean to not feed her."..... sure......just let her have what she could manage to take by mouth -which was at most a teaspoon full -and she would just slip away before long. Needless to say, I don't feel that withholding what is so readily available to help her was appropriate. I deeply believe God will take her in His time- be that today or 20 years from now. I am responsible for giving her the love and good care God intends for all of us. Thank God I am not judged on my abilities and intelligence but on my worth as a soul created by God .I want that for all children.. No matter how unworthy and undeserving we are ,God takes us in His arms and protects and loves us unconditionally. She deserves no less. .Our job is to care for all His children with dignity and respect and to give God all the glory .

March 1998

Elizabeth is now 26 pounds and 28 inches long at 3 1/2 years old. She is still at a 3-6 month level. She is generally happy and will sleep for 2-3 days and nights and then stay a wake for 2-3 days and nights. (She does not have an inside clock that works) Of course she does not have a body temperature regulator either or any growth hormones-or thyroid to function-or kidney regulator--- or eyesight. .or.......but you know with some very new treatment with medication some of those functions have been replaced .She is tube fed and with that surgery had a procedure that keeps her from vomiting her formula which is infused by a pump over a long period of time each day. Her physical therapist are amazed at the enjoyment she gets from the exercise and attention. She coos and smiles and very seldom cries...She likes her peek-a-boo big bird and her horsey that whinneys.. She is holding her head up for several seconds and "looks" around...We still keep music on all the time and she really seems to know..

Early 2000 brought some problems for Elizabeth. We found her breathing to be obstructed to the point she would turn blue sometimes.. After an evaluation it was decided not to do the extensive surgery to remove the tonsils, adenoids and uvula but to just proceed with a trach...After getting the trach she was unable to come off the ventilator that was used in surgery.. So Elizabeth came home not only with a trach but on a vent with oxygen as needed. She was so much more relaxed as she could breathe easier.. She felt much better and began smiling again. It is harder to move her around since she is attached to so many things now but she is much happier and comfortable.

We continue to have trouble keeping her sodium levels where they need to be. This is caused from her diabetes insipidus. Elizabeth gets lab work each Monday morning and we adjust fluid intake and her DDAVP according to the results..

Elizabeth is now 5.5 years old and 45 pounds. (8/00)

She continues to be a beautiful little girl and a joy to her dad and I.

Sadly, Elizabeth passed away on Oct. 10, 2009. She was almost 15 years old.